A Whole Life Strategic Plan for Portsmouth: Implementing Strategy and Guidance for People with an

1 A Whole Life Strategic Plan for Portsmouth: Implementing Strategy and Guidance for People with an Autistic Spectrum Condition and Their Families 2012 - 2015 Introduction The barriers to opportunity for people with an autistic spectrum condition are becoming much better understood since the introduction of the Autism Act (2009) and the associated strategy “Fulfilling and Rewarding Lives”. Those barriers are complex; some are arise from living with the condition, some from public understanding of how someone may be affected. Other barriers are created by common practices and approaches that have not been able to adjust to accommodate the impact of this condition.

Just under half of people with an autistic spectrum condition have a learning disability and many have mental health needs, it is not always possible to assume what works for one person will work for the next. Establishing a strategy that will work for everybody is a challenge and meeting this challenge will need everybody to pull together. This strategic plan adopts the fundamental approach that no one service, business, organisation or individual working to meet the aspirations in “Fulfilling and Rewarding Lives” should have to plan and act alone.

Many of Portsmouth’s public services have come together to help write this document with their experience and expertise. It was clear from consultation with people with autism and their families that only holistic approaches to tackling barriers that cause inequity have a good chance of succeeding. In Portsmouth although we have established a local diagnostic team, to identify people with autism and how their diagnosis of autism will affect them it is not until this information is linked to services that the full value of the diagnosis is unlocked The national audit office gave evidence to the government that a significant amount of money in every community was being spent on people with an autistic spectrum condition with very poor outcomes.

The challenge is to make much better use of public money we already spend by linking service development together, and in doing so for people with an autistic spectrum benefit the whole community.

In the process of writing this strategy it has become clear there are people in hospital, on probation, in prison, in mental health facilities and residential services that may not have needed these facilities had they been diagnosed and supported much earlier on. This strategy hopes to bring everyone together around the aims and vision to work to overcome the barriers facing people with an autistic spectrum condition that prevent them having a fulfilling and rewarding lives. Whilst Portsmouth City Council and the Health Service have a statutory responsibility to make the improvement in guidance issued in 2010, this strategic plan sets out how by working together we can achieve a lot more for our community, which, prevalence figures suggests, includes around two thousand one hundred people with an autistic spectrum condition and many, many more siblings, mothers, fathers, husbands, wives, friends and other family.

2 Executive Summary This strategic plan sets out the key objectives to fulfil this vision and aims, which in turn reflect the aspirations of the government strategy “Fulfilling and Rewarding Lives”. Some objectives can be achieved with the right investment, however many require partnerships and services to become established and better informed about autism The key network driving this change is the Portsmouth Autism Board, which achieves change by bringing together skills, knowledge and experience to inform and persuade decision makers, budget holders and development forums to address the barriers faced by people with autism.

This strategic plan sets out:  The facts and figures about prevalence of autistic spectrum conditions in our community  What we know about the needs of people with autism and how that affects their lives in Portsmouth  A summary of what we have found out from people with autism, including some of their views on what would help them overcome inequities they face  Useful knowledge from researchers, professionals and voluntary groups that work with people with autism  What the people and organisations involved in writing this strategic plan will do to make improvements Portsmouth City Council and the NHS in Portsmouth have statutory duties in relation to autism.

These can be summarised as: o Training staff that provide services to people with autism o Developing a diagnostic pathway, which leads to assessment of need for services o Planning how young people with autism move smoothly from childrens services into the adult world, with the necessary services o Making sure a leadership network that delivers these duties exist The aspirations in “Fulfilling and Rewarding Lives” range much further than delivery of these statutory duties. Achieving those aspirations is what people with autism and their families have told us is important in addressing barriers to equality of opportunity.

This Strategic Plan is the first opportunity the Portsmouth community has had to work together around a shared vision.

3 Vision People with an autistic spectrum condition (ASC) and their families are able to live fulfilling and rewarding lives. Aims  To bring together specific plans and objectives, enabling statutory services, researchers, business, voluntary sector and people with an autistic spectrum condition and their families to work together to deliver the vision in Portsmouth.  To ensure the whole community has the support it needs to understand and act on the issues important to its members with an autistic spectrum condition.

To improve understanding of the support and services family carers and people with autistic spectrum conditions may need and work towards making that support available from wherever it is needed.

1 People with Autism An Autistic spectrum condition is:  “A lifelong condition that affects how a person communicates with and relates to other people. ASC affects how a person makes sense of the world around them...Autism is known as a spectrum condition because of both the range of difficulties that affects adults with autism, and the way they present in different people.” 1  There are three main areas of difficulty known as the “triad of impairments”: o Social communication (e.g. problems using and understanding verbal and non-verbal language) o Social interaction (e.g. problems in recognising and understanding other people’s feelings and managing their own) o Social imagination (e.g.

problems in understanding and predicting other people’s intentions and behaviours).2 Many people with ASC have no obvious disability and find they are misunderstood. Many do not want to be diagnosed or indeed be recognised as having autism and any support that is required falls to 1 Fulfilling and rewarding lives: the strategy for adults with autism in England, 2010. Department of Health.

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publications PolicyAndGuidanc e/DH_113369 Accessed 16 September 2011 Fulfilling and rewarding lives: the strategy for adults with autism 2 Department of Health, 2010. Ibid

4 parents, relatives or friends. The person may also fall between services and not get the right support and this can lead to further problems (including but not limited to anxiety, depression, mental health issues etc)3 . A local estimate of the prevalence of ASC in children and adults in Portsmouth was produced using prevalence estimates derived from the Adult Psychiatric Morbidity Survey, 2007.4 (Table 1).

The Survey found 2.0% of males and 0.3% of females have ASC. It is estimated that about 2,300 people in Portsmouth have ASC and that by 2035 this will increase to about 2,500 people (or fewer than 40 additional people every five years). Table 1 sources (1) 2010-based subnational population projections by sex and quinary age. Office for National Statistics. Published March 2012 (2) Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 Adult Psychiatric Morbidity Survey. Department of Health. January 2012 http://www.ic.nhs.uk/statistics-and-data-collections/mental-health/mental-h ealthsurveys/estimating-the-prevalence-of-autism-spectrum-conditions-in-adults-e xtendingthe-2007-adult-psychiatric-morbidity-survey Accessed 22 May 2012 4.3 Males have a higher prevalence of ASC.

Of the 2,300 people in Portsmouth with such a condition, about 300 (rising to 340 by 2035) are predicted to be female.

4.4The National Autistic Society states that estimates of the proportion of people with ASC who have a learning disability, (IQ less than 70) vary considerably, and it is not possible to give an accurate figure. It is likely that over 50% of those with ASC have an IQ in the average to high range, and a proportion of these will be very able intellectually. Applying prevalence estimates to the local population, predicts that about 80 children with ASC aged 0-17 years have an IQ of less than 70, and about 290 children with ASC aged 0-17 years have an IQ of more than 70. The model predicts that 320 adults with ASC aged 18+ years will have an IQ of 3 Department of Health, 2010.

Ibid 4 Brugha T, McManus S, Meltzer H, Smith J, Scott FJ, Purdon S, Harris J, and Bankart J. Autism spectrum disorders in adults living in households throughout England – report from the Adult Psychiatric Morbidity Survey, 2007 5 Department of Health, 2010. Ibid

5 less than 70, and about 1,130 adults with ASC aged 18+ years will have an IQ of more than 70. 4.4.1 Information available to statutory services about how many people have a diagnosis of Autism in Portsmouth City is not yet robust. Information from the previous two years has given very different figures for incidence of autism amongst the population. o Assuming that very few people have more than one of the above diagnoses, there is a difference of about 1,700 people who are predicted to have ASC but who have not been recorded as such. Explanations include:  Some very able people with ASC may never come to the attention of services as having special needs, because they have learned strategies to overcome any difficulties with communication and social interaction, found fulfilling employment etc  People who would like a diagnosis but who do not know how to obtain one or who feel that the process is too complicated  It has also been suggested that some parents may resist a formal diagnosis if they suspect their child has autism.

Difference in data collection methods which may have impacted on the actual data collected. 2 Having a Fulfilling and Rewarding Life In Portsmouth In order to understand how to implement “Fulfilling and Rewarding Lives” in Portsmouth we needed to establish a much better picture of what was working and not working for people with autism and their families. On behalf of Portsmouth City Council and Portsmouth Clinical Commissioning Group the Integrated Commissioning Unit asked people with an autistic spectrum

6 condition and their families what needed to be included in a strategy. Initially interviews and meetings people with autism, families and with staff working with people with autism helped to focus on key areas for investigation. Service providers in the NHS and also charities and social groups shared their experience. Portsmouth Autism Board asked Dr Beatriz Lopez of Portsmouth University’s Autism Research Network to compile a report on issues relating to Employment, Co-morbidities and public spaces and provide summaries of research in many other areas. The information gained from visits, meetings and interviews with staff, carers and family members about the experiences of supporting and diagnosing people, along with research from Portsmouth University helped shape a questionnaire to obtain more detailed information.

The questionnaire looked at areas of people’s lives where the City Council and NHS might offer most help to cope with the impact of autism. The questionnaire was developed with the help of carers, people with autism and regional partners to try and make sure issues about living across administrative boundaries were understood. Together with partners across the Hampshire the important issues uncovered when speaking to people locally were examined in more detail. The questionnaire was available on the City Council website from August 8th until September 9th 2012. This questionnaire was also discussed and filled in by hand by people with autism.

The responses received were as follows: People with Autism 23 Professionals working with Autism 42 Parents of Children with Autism 20 Parents of Adults with Autism 7 The issues recorded in the questionnaire were summarised and entered into the JNSA briefing note here: http://www.portsmouth.gov.uk/living/19094.html . This strategy is intended to address the responses we received about opportunities and support in Portsmouth for people with autism and their families, good and bad, in the context of implementing “Fulfilling and Rewarding Lives”. Overall, the picture we gained of living with autism in Portsmouth suggested everybody would need a personalised approach to getting the help, information and support they needed.

However, there were similar enough needs across the whole population to suggest an overall pathway of support might be a helpful framework in making plans for working towards a more fulfilling and rewarding life for people with autism and their families. We will:  Publish an Autism Pathway outlining how all the support for people with autism in the city links together  Identify gaps in the pathway and work towards meeting those gaps using the best research and guidance available

7 3 Diagnostic pathway – What “Fulfilling and Rewarding Lives” says Rewarding and Fulfilling Lives sets out a key aim as: “Developing a clear, consistent pathway for diagnosis in every area, which is followed by the offer of a personalised needs assessment” 3.1. Diagnostic pathway – What we heard from people in Portsmouth Most people felt that the experience of undergoing an autism diagnostic assessment could be improved by better support and information, in addition waiting times for assessment were thought too long.

Waiting times for assessment varied from a few months to many years in some cases, there appeared to be no pattern in how long people waited for assessment.

Those people who had to wait less than four months for the diagnostic assessment were most satisfied. People also said they preferred not to have to travel long distances to undergo the diagnostic assessment. Those people who had to wait many years for a diagnostic assessment had in many cases been wrongly diagnosed, or treatment for other conditions had not taken into account an undiagnosed autistic spectrum condition. Those same individuals reported better personal well-being when their autistic spectrum condition was finally diagnosed.

The diagnosis process itself was seen as a long-winded and furthermore a lack of information and support throughout the process disappointed many people. There were particular concerns that some diagnostic assessments for children outside the city did not take a holistic view. The approach to holistic assessment and multi-agency working was seen as inconsistent and confused by those who commented. There was no typical reported experience of obtaining a diagnosis, people did not know what to expect and often felt they were not sure what might happen once the diagnostic process had been completed.

In some cases post diagnostic support and the potential for further review to improve the information available about an individual’s particular diagnosis was reported as a missing part of the diagnostic procedure. Some people funded a diagnostic review themselves, unaware of the local pathway for diagnosis. Everyone reported having a diagnosis has made life much easier as it helped them to understand their own behaviour and responses, or those of their sons and daughters.

People who responded to the questionnaire told us they would like the opportunity to share their experience of the process of undergoing a diagnostic assessment, or would like to hear about someone else’s experience. Having a clear diagnostic process with support and information available throughout the process and help to deal with the outcome of the diagnosis process was seen as essential by many people. This is what people told us they wished to be considered:

8 “Practical, structured support and guidance on living with ASD” “Clearer ways of achieving a diagnosis.

Describing what happens at a diagnosis. How to get a diagnosis, costs etc.” “ why, when they are finally relieved to know what is ‘wrong’ with them, were they not given any information on where to go for support”. The autism diagnostic service for adults is currently being developed with the local health community services provider Solent NHS Trust. The diagnostic review process for children is currently provided from Solent NHS Trust at locations in Portsmouth and Southampton. Work is underway to develop the diagnostic review services to better meet the aims of the strategy.

What we will do:  Commission a clear diagnosis pathway for children and adults Developing Diagnostic Pathway for Adults

9 Developing Pathway for Children Integrated Care Pathway for Autism Spectrum Disorders (ASD) Portsmouth City Stage 1: Initial Concerns: Communication and Social Interaction Gathering Information Stage Parental concerns or professional concerns (with parental consent) directed to:- Speech and Language Therapist/Health Visitor/GP/School Nurse  Developmental Assessment  Provides advice/intervention/ refers to other agencies (Child and Adolescent Mental Health Services (CAMHS), Community Paediatrics) Early Years Setting/School  Special Educational Needs Coordinator implements SEN Code of Practice  Refers to Teacher Support Services and/or Educational Psychologist  Refers to Community Paediatrics, or Educational Psychologist may refer to CAMHS Professional involved advises parents of community, voluntary and independent support services Lead professional is identified Stage 2: Referral for Health Assessment (to consider and exclude any additional health needs or other diagnoses) Notify GP if GP is not making the referral themselves Referral to Community Paediatrics or CAMHs Stage 3: Comprehensive Assessment Supported by multi-agency information Parents and all the professionals involved with child contribute to the assessment A multi-agency meeting is held to share information.

If this is not possible, then the lead professional is to collate the information.

Stage 4: Outcome of Assessment Stage 4a: ASD Identified Stage 4b: ASD Not Identified  Diagnosis and Information Pack given to parent  Multi-agency working with ‘Team around the Child’ continues  A care plan is prepared and implemented  Supported by lead professional  Parents given information about relevant ASD training, locally available intervention approaches and Support agencies (community, voluntary and independent) ASD Excluded ASD Not Excluded Alternatives explored and appropriate support given through the lead professional Referral for community Paediatrics or CAMHS for handover/2nd opinion or joint assessment No multi-agency consensus for ASD Case discussion with multi-agency assessment team Multi-Agency Working Continues with Team Around the Child Facilitated by Lead Professional Stage 5: Transition

10 3.2.Getting on the pathway – What we heard from people in Portsmouth Getting access to a diagnostic assessment for an autistic spectrum condition was identified and something that was difficult in very many, but not all, people’s experience. For parents for young children getting a diagnosis early was seen as particularly. This enabled the most appropriate services to be put in place from an early age tackling the negative impacts of an autistic spectrum condition more quickly; however it was acknowledged that autism may not be suspected for some time, in younger children. Along with Health Visitors and professionals associated with schools, GP’s act as “gatekeeper’s” and the range of experience and knowledge these professionals have about autism has led to people experiencing different access to a diagnostic review.

Where people described themselves as having a supportive GP they described themselves as lucky and their experience as positive.

We were very lucky because we have a very supportive GP who sent us to a centre in Kent because there is nothing in the Hampshire area”. “I will never forget the feeling of desperation, of loneliness, of complete helplessness. I had no one to turn to”. There is a lot of evidence to suggest that intervention at the earliest possible point significantly improves outcomes for children with an Autistic Spectrum Condition. For many people a delay in receiving a diagnosis is at best unhelpful and at the worst can lead to the provision of expensive services that are not only inappropriate and ineffective, especially in later life.

The personal stories of some people commenting on this plan suggested this might also mean more expensive and intensive services are needed later on. Helping GP’s and others to refer as early as possible will mean improving the understanding of autism, making the pathway much clearer and improving access to quick effective screening. Other professionals acting as gatekeepers to assessment in early years could also be supported with better screening tools. This may make it possible for effective referral for a diagnostic assessment to come appropriately from a number of sources, including individuals who suspect they may have an autistic spectrum condition themselves.

4 Access to Health What Rewarding and Fulfilling Lives Says: “The end goal is that all NHS practitioners will be able to identify potential signs of autism, so they can refer for clinical diagnosis if necessary .., but more importantly so they can understand how to adapt their behaviour, and particularly their communication, when a patient either has been diagnosed with autism or displays these signs. This in turn will mean that adults with

11 autism feel more comfortable seeking healthcare – not only reducing the likelihood of challenging behaviour in healthcare settings, but more significantly meaning their health needs will be identified and addressed earlier.” The role of GP’s and Primary Care in relation to suspected autism is defined in the section on the diagnosis pathway.

4.1.Acute and Hospital Care The Picture in Portsmouth The review undertaken by Portsmouth University’s Department of Psychology supported cited evidence of how adjustments to lighting, furniture, background noise and odours might all reduce stress and facilitate better outcomes for people with autism. Local feedback from people with an autistic spectrum condition to hospital staff related to the physical care environment. This led to a decision to explore how Portsmouth Hospital Trust could develop simple, practical guidance for staff. A visit by a group of young people with autism from the “Pirates Are Cooler Than Ninjas “ group provided an opportunity for the review of the Medical Assessment Unit, Day Surgery Unit and a medical ward which commonly cares for people with learning disability and/or ASD.

This has resulted in: o An outline for a specification for a “sensory friendly” room which avoids overstimulation o A plan for the repainting of a lift lobby to more muted tones o The development of improved information for people attending day surgery related to the steps in the process including the use of lockers for personal belongings. The Hampshire Autistic Society has developed an Alert Card to help emergency services understand how to communicate better in difficult situations. This initiative is a very welcome example of schemes that can help people with autism if they need emergency care.

What we will do:  Support Portsmouth Hospital Trust to establish a rolling programme of environmental review is undertaken across the Trust. 4.2. Health Care in the Community The Picture in Portsmouth Around three quarters of people with an autistic spectrum condition and many parents who responded to our survey told us they had used mental health services or experienced anxiety and depression. Difficulties with social

12 situations and social isolation were highlighted as a concern by many people with an autistic spectrum condition, their families and by professional staff.

People also told us it was hard to get the right support with a mental health need and an autistic spectrum condition as there was no specific support available for an autistic spectrum condition. The review report produced by the department of psychology identified very high instances of co-morbidities associated with autism affecting people’s mental health. This table is taken from the Portsmouth University Autism Research Network Report “Employment schemes, design of public spaces and co-morbidity in adults with ASC” 2012 by Dr Beatriz López, Emma Mason, Ceri Russell & Ania Ryszkowska Children Adults High-functioning Lowfunctioning HighFunctioning Lowfunctioning Anxiety disorders 55.3 % ( De Bruin et al., 2007) 43% (Sukhodols ky et al., 2008) 84% (Muris et al., 1998) 42% (Sim onoff et al., 2008 ) 25% OCD (Russell et al., 2005) 50% (Lugneg ård, et al., 2011) 12% (Mosel ey et al., 2011) 42% (Bradle y et al., 2004) Mood disorders 17% (Depression ) (Kim et al., 2000) 37% (Ghaziu ddin et al., 1998) 36.4% (Munus ue et al.,2009 ) 50% Depres sion (Lugneg ård,et al, 2011) 53% (Ghaziu ddin, et al, 1998) 43% Depre ssion (Sterlin g & Dawso n, 2008) 67% Mania (Bradle y et al., 2004) 50% Depre ssion (Bradle y et al., 2004)

13 Some people accessed the “Talking change” service and the Community Mental Health Team, half of those people said the service had helped them. Many people told us they felt they had struggled alone for many years with no help and support from any community services. Parents and carers shared this experience: they told us the opportunities to take a break from caring available to them were insufficient, especially where the person they cared for received no formal services. Many Carers had experienced relationship break up and said they felt “vulnerable”, or “anxious and depressed”. People with a learning disability and autism do receive support from the learning disability community health team.

This includes clinical assessment and intervention aimed at addressing communication, emotional, psychological, occupational and sensory needs if appropriate. Increasingly, people who use services and their families’ expectations of a modern service are that people’s needs are treated holistically and with a person centred approach; this is reflected in Department of Health guidance such as No Health without Mental Health (2011), Valuing People Now (2009) and Intermediate care – Halfway home: Updated guidance for the NHS and local authorities. (2009) The development of a team led by mental health practitioners to offer a diagnostic assessment for autism will improve the opportunity to offer holistic person centred plans for improving mental health and well-being.

Services for people with an autistic spectrum condition and a learning disability are effective, but their reach is limited. For people with a common mental health condition the “Talking Change” service can be effective. However for people who do not have a learning disability there is currently no means of delivering co-ordinated support outlined in person centred plans accompanying a diagnosis. Also for people whose mental health need is deeply entwined with the Autistic Spectrum condition there is currently no specific psychological service.

His experiences throughout his life has led to mental health problems...he still suffers from depression and anxiety”. ”Mental Health Nurse was very helpful” “Support (even if low level and relaxed)” What we will do  Develop a network in health and social care service services to work to bring about the aspirations described in "Fulfilling and Rewarding Lives".

14 5 Education and Awareness What “Rewarding and Fulfilling” Lives says “...real success will depend ultimately not only on transforming services, but on changing attitudes across our society.

We need to build public and professional awareness and reduce the isolation and exclusion that people with autism too often face”. 5.1.Awareness The Picture in Portsmouth The need to improve understanding of autistic spectrum conditions in the community was highlighted by a considerable proportion of those who responded to consultation. The need for a public education campaign was discussed in terms of the benefits from the perspective of family, professionals and people with an autistic spectrum, by people who responded to consultation. Impairments related to autism make social interaction very difficult and parents told us this tends to be seen as ‘bad behaviour’ in younger children or ‘playing up’.

For young adults who responded to the consultation they told us many of their anxieties and worries emerged from interaction with people who had no idea they had an autistic spectrum condition, or who had no idea about how having an autistic spectrum condition might impact on behaviour. For many parents there are positive impacts on their own personal development and they were keen to share the positive impact an autistic spectrum condition might have. Many people felt their employers could benefit from knowing a lot more about how autism might impact in the work place and how to make reasonable adjustments with this in mind.

The view of people who are diagnosed in later life is that their employment is at risk because of their autistic spectrum condition. In fact, difficulties at home or work are often the prompt for a diagnostic review. Many professionals who worked with people with an autistic spectrum condition also felt the community and employers could be a lot more supportive with clearer ideas of how autism might impact on the person they support.

I am extremely proud of my son and would not be doing the job I have today without him”. “Parents should be more educated about what their children, young people are capable of because I feel a lot of them hold back because they say they can’t travel alone” “Educate employers about the benefits of employing someone with autism”;

15 What we will do:  Support a campaign and awareness programme with our partners to improve opportunities for people with autism in the City 5.2.Lifelong Learning The Picture in Portsmouth There is a range of training and support available to parents, children and young people with autism in Portsmouth.

Some of this support is delivered directly through schools with particular expertise in Mary Rose School, Cliffdale School Milton Park Federated Primary School, Harbour School and Redwood Park School, which have formed the SEN partnership. Parents have also told us they have received support from Portage and the Willows Nursery. In pre-school the PELICAN team helps children with autism at home and during the transition to school; this service has slowly extended its reach and is looking at how to augment its service. A variety of services aimed at children and young people reach into schools, these include speech and language therapy and services targeted at improving social and communication skills associated with autism.

There is also training and support for schools to improve their skills and awareness, such as the autism award currently offered by the Educational Psychology department. People with autism who responded to our survey had a great deal to say about their experience of education. In their responses were a wide range of ideas about how their experience might be improved. One respondent suggests most people describe a lack of understanding and awareness about autistic spectrum conditions. Almost all respondents with an autistic spectrum condition describe feeling anger and frustration because of their interaction with the education system and many report bullying.

About half of these people did not receive their diagnosis until after they left school; however their experiences were not different from those who did receive a diagnosis. Respondents are very clear about asking for help, with many people able to express exactly what would help. With the wide range of services that already exist, ways to develop the support on offer to take account of those views is underway.

Many of the staff that responded identified a lack of secondary school provision for people with autism and complex needs. There was also a great deal of concern that capacity in Portsmouth for children with complex needs was under pressure. Support for teachers in mainstream education along with resources to support children and young people with autism was highlighted as another area where early progress could be built upon. In colleges and mainstream settings the challenges of managing behaviour caused a lot of anxiety. Many staff commented that responding to the needs presented by children and young people holistically was important.

Having a diagnosis of autism could help equitably focus support, but a person centred approach and

16 joined up planning should help match the right resources and skills needed to improve outcomes for any child or young person. For a few children and young people this will mean formal plans, but many others could benefit from better co-ordination of the support already available to them. “Somebody should be employed by the school who understands someone with autism” ”I was bullied heavily at school for being different by pupils and teachers alike” “Someone you can talk to and speak up fro you, help you solve problems with people.” What we will do  Work to augment the support for children and young people with autism for fulfilling their potential in education.

5.3.Transition What “Rewarding and Fulfilling Lives” says: Through school, children with autism and their families will usually have access to support that helps them achieve and be included. It also provides a focal point of activity in the day. Therefore one way of improving access to services for adults with autism is by focusing on managing the transition to adulthood so that young people have access to the services they need from the start of their adult life.

5.3.1. Transition to Adulthood The Picture in Portsmouth There were positive and negative comments about accessing and using the current range of support for young people with an autistic spectrum condition. Some young people with autism are receiving education in settings outside of the City and may need to grow their circle of friends and family A small number of young people with autism will also have need complex support needs and require formal plans, however many people believed they would benefit from better help and support during the transition to adulthood. The opportunity to build on good practice and effective support in education, whilst maintaining an equitable service for people with autism was recognised by a number of people in discussions about developing this strategy.

People with autism, their families and professionals told us a lot about their experiences of young people moving into the adult world. Most shared the view that transitions between school, college and work were very difficult for most people because of their autistic spectrum condition. A significant number of respondents to our survey felt a specialist team to work with young

17 people in transition from age 13 would be helpful. In addition Portsmouth University’s Autism research Network Issue 4 on Employment indicated early support is likely help individuals make better progress towards achieving a fulfilling and rewarding life. A whole range of services, employers and the community have an important role to play in improving the access to opportunity for young people with autism, and better co-ordination might improve the impact of those services. “Include individuals with autism!” “The offer is inconsistent and not joined up enough” “I feel strongly that child and adult pathway needs to be joined” “Obtaining consistent support for youngsters aged 14-18 is difficult” What we will do  Develop transition protocols between schools and services that are based on person centred approaches 5.3.2.

Transitions as an Adult "Fulfilling and Rewarding Lives" does not mention other transitions specifically, but local knowledge and expertise has identified other transitions as needing careful attention also.

The Picture in Portsmouth People with autism will also experience transitions, like most others, relating to their employment and housing, and in particular, retirement. However for people with an autistic spectrum condition the change to unfamiliar routines and social interactions can be significantly stressful. Retirement is known to bring about a significant change in the institutions and structures that surround people and provide the framework within which they participate in the community. The Health service consistently receives requests for diagnostic assessments for people in later life who are finding it difficult to cope whilst experiencing transitions.

Portsmouth City Council’s Adult Social Care workforce will regularly deal with issues for people growing older and accompanying challenges to independence. This expertise may well be difficult to deliver without the right level of awareness of autism in the workforce. The workforce development objectives detailed later in this document will help to ensure access to services and support is not compromised simply because an individual has an autistic spectrum condition. What we will do

18  Support and Encourage the use of Person Centred Planning techniques for people with autism 6 The Built Environment What “Rewarding and Fulfilling Lives” says: “Local authorities are already required under the DDA to take account of the needs of disabled adults when considering housing provision.

This includes taking account of the needs of adults with autism and means that in allocating homes to adults with autism, housing services should take account of individuals’ needs, as identified through the needs assessment process, as they should for any other vulnerable adult.” 6.1.Homes designed for people with autism The Picture in Portsmouth: The environment in which an adult with autism lives makes a significant difference to the quality of their daily living experiences. Good building design can make a significant impact on sensation, reducing the impact of people with extreme sensitivity to sound or colour, alternatively stimulating those who sensations are underdeveloped.

For some people with autism good building design can make the difference between living independently or in residential service. When we asked people with autism whether sensory issues affected them around half of those who replied said bright lights and loud noises affected them badly. Of those people with autism who answered our survey over 80% said crowds of people were an issue, making clear the importance of home as a refuge which enables people to cope with everyday life. “My house... gives me space to get away form everyone who isn't my family in the evenings and weekend”.

6.2.Finding and maintaining an independent home For many people with autism, despite their vulnerability and susceptibility to sensory issues, they are unlikely to have social care needs significant enough to become a priority for support with housing. Nevertheless people with autism do need housing and can live very independently with the right attention to environment and support. With the right sort of support and reasonable adjustments to enable access to support the whole community uses adults with autism will have increased opportunity to reduce their longer term dependence on health and social care services and experience a rewarding and fulfilling life in the Portsmouth Community.

For other people with autism they may have a learning disability, or their autism increases their vulnerability to an extent where social care support is necessary. Currently Supporting People and residential services support many individuals with autism to remain independent in these settings. There

19 should be continuous improvement in these services to better understand and meet the needs of people with autism living in these settings. What we will do:  Support housing teams to train staff appropriately to help them work more effectively with people with autism and highlight gaps in services to the housing department 7 Work What “Rewarding and Fulfilling Lives” says: The ability to get, and keep, a job and then to progress in work is the best route out of poverty, and a central part of social inclusion. We know that adults with autism are significantly underrepresented in the labour market and we are committed to doing more to help adults with autism into work.

7.1.Getting ready for work The Picture in Portsmouth Many people with an autistic spectrum condition can work, however many do not have the opportunity. Only 1 person who replied to our survey worked full time hours, most people only worked between 0 and 7 hours, about a third of people worked in a voluntary capacity; 1 person had never worked at all. National research undertaken by M. Knapp, R. Romeo and J. Beecham in 2009 estimates the hours of work lost or disrupted for people with autism and their families amounts annually to £19,785 for people with high functioning autism and £22,383 for people with learning disabilities.

They also estimate the cost to the economy as a whole is £25 Billion, 59% of which is the cost of public funded services.

The Jobcentre Plus works with people who are aged 18+ who are receiving either Employment Support Allowance (ESA) or Jobseeker's Allowance (JSA) because they have been assessed as either able to participate in work related activities to assist them into the labour market - or fully able to work despite having a health condition or disability. This should include many people with an autistic spectrum condition and the team of health advisers already work with a number who have Autism. Consultation suggested taking a more joined up approach and developing better awareness with health & social care professionals about who the Jobcentre Plus service could be very effective.

This could also help with easing the transition to adult services when young people have to start attending Jobcentres, after leaving education. In addition older customers who may or may not be diagnosed could benefit from greater awareness of autism within the service, which would also help improve how the service works with people - e.g. using quiet rooms for meetings etc.

20 When we consulted we heard only a few stories about the other sources support people had to find work and achieve in the workplace. Many employers are unaware of the Access to Work scheme which enables individuals to ask for money to improve their support in the workplace. Some support in employment came from Mencap, who visited to support a work placement regularly, however the service ended after 3 months. Support for people with autism to enter and maintain employment will help start to address an estimated spend, on public services in Portsmouth, of around £27,000,000, based on recent prevalence figures.

For people with autism in work, there is a great deal of support, including financial support, available to employers. However respondents to consultations express some frustration with employers around making adjustments.

I am allowed to work from home one day a month which is the same as everybody else”. “Autistic people have a wealth of qualities beneficial to the workplace but many employers are ignorant and afraid to face the disability” The most requested adjustment was a quiet environment. Work of some nature is a key plank of community life and as required by “Fulfilling and rewarding Lives” we will focus our energy on improving community life here. What We Will Do:  Encourage people with autism to develop aims, goals and skills around how they would like to engage in community life and help improve access to services to implement their plans  Identify gaps in the pathway for support with employment that stop people getting a fair chance and develop plans to address them 8 Supporting Carers and Families What "Fulfilling and Rewarding Lives" says: “It is essential that the views of adults with autism and their carers are sought and taken into account in the development and delivery of services locally, in line with the duty to involve set out in Creating Strong, Safe and Prosperous Communities.” “It is best practice that diagnosis of autism is recognised as a catalyst for a carer’s assessment.” 8.1.Caring for younger people with an autistic spectrum condition

21 The Picture in Portsmouth Family Carers of children with disabilities remain carers for most of their lives, even when other services step in as their sons and daughters become adults. Portsmouth City Council and the health service in Portsmouth have developed a Carers Strategy to better meet the needs of all Carers in Portsmouth, including those who have sons and daughters with an autistic spectrum condition. This can be found at the web address below: (http://www.portsmouth.gov.uk/media/Portsmouth_Carers_strategy_2011- 2015.pdf).

There were a number of issues specifically relating to caring for people with autism that we learned about from consultation work: Parents feel strongly that they would welcome more support following a diagnosis for their child.

For some parents the groups already offered in the south west of the City were too difficult to access. Carers who faced this difficulty had set up a “micro” group of between 2 to 4 carers who met locally and helped them support each other. Parents also commented positively on training experiences, although there was a call for training for parents to be free of charge most training can already be accessed free of charge. Some Parents believe people with autism have their own world view, different from other people’s, but express this world through social stories which highlight the stress and anxiety they face.

This stress and anxiety is largely related to social contact. In one parents opinion her son “has no understanding of the impact he has on others around him” and in another’s her son “Is unable to make friends”. A reluctance to initiate social contact is a recurring theme, along with a view from parents that their sons and daughters are happiest living in their own “bubble”. Families relayed stories of their son or daughter autistic spectrum condition dominating the whole family’s life, which gives insight to the extra pressures faced by families caring for a son or daughter with an autistic spectrum condition.

He has recorded his stories of these families, and the autistic young person is always getting into trouble” “We learned to live with his lists, timetables, holidays planned up to a year in advance”. A highly significant number of respondents commented on the impact of having a child with autism on family life, including concerns about going out as a family, doing typical family activities, accessing public events, eating as a family etc. Some parents commented on how the difficulties of having a child with autism have impacted on their own mental health and emotional wellbeing and that of the child’s siblings.

A number of participants highlighted the positive contribution made by support groups in the city, particularly Portsmouth Autism Support Network (PASN) and “Pirates Are Cooler than Ninjas”, a support group for people with autism.

22 The need to continue to have support groups for families, including some requests for more family support, with a buddying system was requested by many participants. Concerns were also raised about a perceived lack of short break opportunities for families in the city, as well as organised social opportunities for young people/ children with autism.

PASN has “allowed us to go out as a family without anxiety” Pirates “allows me to go to a place where I feel normal” “College has been difficult not the work but the other students being difficult” 8.2.Carers for Older people with an autistic spectrum condition The Picture in Portsmouth For many people with an autistic spectrum condition they do not receive their diagnosis until they become an adult. For some people there is evidence they are misdiagnosed and it is only when they receive a diagnosis of autism in later life that their support really begins to work for them. For many older people with an autistic spectrum condition their carers will have had little help and support throughout their life and have substantial concerns for their sons and daughters futures when they have passed on.

In most cases people who enter the diagnostic process later in life because they encounter difficulties at work, or in their family life. Where people have received a diagnosis this has given them and their families vital clues about how to overcome these difficulties. People who we consulted cited the support of friends being key, at this time, to them remaining in employment, or in a relationship. These people expected they might need this sort of low level support only irregularly and at points of great stress to help them to overcome difficulties, as they present. Our consultation suggested many people may be able to overcome the challenges living with autism presents without direct support from the statutory sector, if they have a source of expertise and a strong peer network.

His autism has limited his life choices, and has created anxieties and obsessions which prevent him doing activities which he clearly enjoys once he can get to them.” “Autism is lifelong. It does not get better but it morphs with maturity.” “I have felt very alone in dealing with the difficulties autism brings, and have had many fears about his future.” What we will do:  Ensure the Carers Centre are aware of sources of support that will enable carers and siblings of people with autism to keep caring

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